Through A Different Window

~ Bless those who see life through a different window

and those who understand their view ~

Be who you want your children to be

Independence Day 2015

Children Of Parkinson’s

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Never Lower Your Expectations Of Kindness

There are elements of Parkinson’s Disease that are rarely discussed. When outsiders think of the disease, their mind often flashes first to the always-lovable Michael J Fox and his great demeanor and positive outlook. Optimistically, we prescribe to his Always Looking Up mentality, but in reality, there is a whispered side of Parkinson’s that those in the community live every day.

Parkinson’s Disease is the world’s second ranking neurological disorder, yet other than the textbook tremor, many people are unfamiliar with the symptoms. It would be a great case study to examine how people who are unaware of the disease can treat a person who has the disease. When we go out as a family, we notice these people. We feel the stares, hear the loss of patience, and see the rolling of the eyes. We can imagine what is whispered. We’ve heard questions asked if he is drunk. We listen to the obligatory, “I’m sorry” once we disclose the diagnosis to new acquaintances. We are aware of both friends and strangers relief, thankful it’s not them.

As parents, we witness our children’s response as they look down to the ground, awkwardly wishing the moment would pass. Children are best at observation. They quietly read body language, posture and tone. They understand differences. They are forever processing. They are honest in their assessments and when they relay things back there is often no filter.

Our youngest daughter innocently asked, “Why do they think dads unseen” and in a recent journal entry she wrote
” People tret Dad like hes invisible and think he is werd. Like when people see him they make mad and bad facesūüėü”

‚ÄúPeople tret Dad like hes invisible and think he is werd. Like when people see him they make mad and bad faces‚ėĻ‚ÄĚ

It pains my heart that at seven she understands that people glance over her dad, but yet she can’t process it. Here’s the man who she loves and thinks is amazing, but at the same time, struggles with others recognizing that there is something very different or strange about him. He has had Parkinson’s her whole life, and she knows that his disease at times can be limiting and hard. She is innately kind and patient, but each instance questioning why others find this difficult to do. Through her eyes I see the disconnect.

I don’t have an answer for her.

I could tell her ~ It’s ignorance.¬†
I could tell her ~ They don’t know better.
I could tell her ~ She was wrong and excuse away the behavior.
I could tell her ~ They are just having a bad day.
I could tell her ~ It doesn’t matter.

But we won’t

It (he) does matter.

Ignorance is not an excuse.

In 2015, regardless of what someones ailment is, they should know better.

She does understand and their behavior is wrong. What she is seeing is real – insensitive, unkind, inexcusable, thoughtless people are among us. She watches her father fight everyday to do things he once took for granted, from small things such as buttoning a shirt and writing to much larger things like walking, talking and keeping his balance steady. She sees him. He is not invisible. His love is as real as his challenges. He’s not “werd” (weird). He’s just her dad.

It’s a shame to say that people’s perceptions of us can affect our daily lives; that negativity and neglect could shape our children. Our goal is to make sure our girls never lower their expectations of how they should be treated and vice versa. Circumstance has taught my girls strong lessons, and I am grateful for the virtues that they now hold.

Treat others how you wish to be treated yourself.
No one is irrelevant.
Kindness matters.

Resilient ?

resilientI had to look the word resilient up in the dictionary. ¬†Maybe I didn’t have a clear understanding of this adjective that is frequently used to describe children and how they respond to many of life’s challenges. ¬†When talking honestly and openly about our children and Parkinson’s,¬†we keep hearing “kids are resilient”. ¬†As if to discharge those little bodies with large minds and their journey through life with a parent who has an illness. ¬†Often when you state a worry about your child and how they are processing things, you are dismissed.

“They seem happy.”

“They will be fine.”

“Kids are resilient.”

If I had a dollar for every time I heard this……

Taken from Merriam-Websters Dictionary it reads –¬†Resilient:¬†Able to return to an original shape after being pulled, stretched, pressed, bent, etc..

I personally have a visceral response when I hear this uttered. My children will never “return to an original shape”. ¬†Their lives have been completely altered. ¬†Their hearts pulled and their minds stretched to limits that I truly wonder where the ceiling will be before breaking. Children are not prepared to see someone they love deeply suffer.

Our children are never going to “bounce back”, “rebound” or “recover”. ¬†They will be forever changed from what they witness, see and feel and that’s OK! ¬†It’s our firm belief that they will in turn make this world just a little better because not returning to their original form is pretty awesome too.

We choose to believe they are Thriving: to progress toward or realize a goal despite or because of circumstances

Because their blue print has changed forever, they will have strong voices, be leaders, show compassion, be teachers, and become the best little advocates one could ask for!

thrive

DSC_1107

Children Thriving In The Face Of Adversity.

Dad Fell…….Again.

Falling is a reality for many Parkinson’s sufferers. ¬†Balance and gait become impacted in many ways. ¬†We will never become accustomed to the spills of a 6 foot 4 man who was once so physically strong. ¬†Don’s falls are simply scary for him, as well as us. Sometimes we see the warning signs, but lately, more often than not, we just hear the thunderous crash followed by silence and then feet running from all directions to see what we will find.

It’s those unexpected findings that has our 6-year-old feeling uneasy.

Pre Fall Smiles!

Pre Fall Smiles!

Hadley knew at the age of 3 how to dial 911 and what our address is. ¬†Not because these were preschool bench marks but because the likelihood of her needing to use this information was high. ¬†How many other families can say they have emergent plans for “what if dad falls”? ¬†Most families barely have plans in place in the event of a fire.

Often when I leave the house and Hadley is alone with her dad, a definite uncertainty starts to boil to the surface. ¬†It’s as if I can see her heartbeat starting to race and that little brave soul kicking into gear. ¬†She wants to be courageous but the unknown is scary. ¬†So she begins asking very specific questions.

What time are you coming home?

– what she’s really asking is: How long do I have to be fearless for?

Will you be able to answer your phone?

– what she’s really asking is: Will you be there if I need help?

Can you call me and tell me when you are headed back?

– what she’s really asking is: Can you tell me when I can stop worrying?

Do I call 911 if I can’t get you?

– what she’s really asking is: ¬†Is it ok if I can’t do it all by myself?

Leaving Hadley feeling comfortable and confident is getting harder and harder to do. ¬†Her internal sense is one I have to listen intently to. ¬†I don’t want to deprive her however, of that ever important one on one time with her dad. ¬†Oh how I wish that while I was gone her only fret was about what Barbie is wearing and making a huge play dough mess together.

A day of face painting and an falls.

A day of face painting and falls.

We are getting really good at communicating with each other, another great advantage of modern technology. Below is a video Hadley texted me, after Don fell while I was out.  Hours earlier we were all enjoying a neighborhood fair, attempting to have a normal Saturday.  I had just run to do the mom thing Рgrocery shopping.  I was only going to be gone for a quick moment.  You can see the remnants of face paint on her sweet innocent cheeks in the video below.

watch here http://youtu.be/MtYwyZJ5UIo

Her response was calm and positive but that fear of “what if” will not leave her.

A fall can happen any moment for us. ¬†Parkinson’s isn’t thinking not now, not today or wait until mom gets home. Falling is rapidly loosing control. ¬†I believe for families of Parkinson’s sufferers, we all feel that lack of control whether we hit the ground physically or emotionally.

Father’s Day Via Instagram

Instagram is one of those social media platforms that some would say we opened the door too early and allowed our 11-year-old to partake in.  Our concession to this method of communication comes with as many rules and regulations as Obamacare.  One of the caveats would of course be, to monitor her account.  Most of her posts are harmless selfies.

This Sunday when we checked we saw this.

Always be my no 1!

 

An image of her and her dad at a cotillion father – daughter dance earlier in the year.

The picture is precious to me for many reasons

but now, add her comments (minus the spelling errors)

and it is truly priceless!

Libby is at the age when we, as her parents, can be embarrassing for a host of reasons. However, when your dad is not like all the other dads, physically, it seems to stand out. ¬†We are simply, more aware that his Parkinson’s Disease may add to her discomfort or questions from friends.

So, it was refreshing to see her proclaim “no madder” what, he’s her #1 man –¬†for all to know.

 

Until there is a cure we will be the change.

Small Part Of The World

It’s the end of the school year for our little kindergartener. ¬†Her class recently had a performance at school for the parents where they sang the song

I am a small part of the world.

 I remember our now 11-year-old singing the same thing a few years back and getting teary eyed.
Libby 2007

I have a small dream in my eyes. – Libby 2007

This year it touched me deeper. Was it because I was really listening this time? Or because I could see Hadley, not only singing the words but really believing what she was saying?
Hand In Hand Dreams Combined

I have a small voice ringing clear.

I saw that little body, that we love so much, singing about freedom, dreams – and coming together. For us, part of that dream means freedom from a disease. We are all a small part of the world and together we have nothing to fear.Take my hand.

DSC_0053

But if I stand by your side and you put your hand in mine, Together we can be so strong and bold. – Haddie 2014

I AM A SMALL PART OF THE WORLD by Sally K. Albrecht and Jay Althouse
I am a small part of the world.
I have a small hand which to hold.
But if I stand by your side and you put your hand in mine,
Together we can be so strong and bold.
I am a small part of the world.
I have a small dream in my eyes.
But if I tell you my dreams and if you add yours to mine,
Together we can reach up to the skies.
Hand in hand, dreams combine,
Voice with voice, together for all time.
Hand in hand, dreams combine,
Voice with voice, for all time.
I am a small part of the world.
I have a small voice ringing clear.
But if I sing out for freedom, and you add your voice to mine,
Together we have nothing left to fear.
Hand in hand, dreams combine,
Voice with voice, together for all time.
Hand in hand, dreams combine,
Voice with voice, for all time.
I am a small part of the world.  Take my hand.

 

Keep Going!

Don’t Stop Trying Because You’ve Hit A Wall‚Ķ‚ĶDSC_0128Progress Is Progress No Matter How Small!

Never know where you'll end up if you don't keep going!

You never know where you’ll end up if you don’t keep going!

 

Just Being Is Fun

Sometimes we dwell on the changes we have undergone and are scared of what lies ahead but because of these two little ones we opt for a different path.

I never lose sight of the fact that just being is fun. ~ Katharine Hepburn

DSC_0272

Quote is by Katharine Hepburn РMany know her from her amazing breath of work on-screen.  Others know her for having Essential Tremor as well.

Essential Tremor is a neurological condition that causes a rhythmic trembling of the hands, head, voice, legs or trunk. Some even feel an internal shake. It is often confused with Parkinson’s disease although ET is eight times more common and affects an estimated 10 million Americans alone.

A few great resources for ET are  International Essential Tremor Foundation and Tremor Action Network

Another quote by Katharine Hepburn

“Now to squash a rumor. No, I don’t have Parkinson’s. I inherited my shaking head from my grandfather Hepburn. I discovered that whiskey helps stop the shaking. Problem is, if you’re not careful, it stops the rest of you too. My head just shakes, but I promise you, it ain’t gonna fall off!”.

See What Love Can DO!

2013 is closed! On the books and recorded.

Our year is best summed up with the lyrics of an Eric Clapton song

Because

~When you tell your story

~¬†Make sure your story’s right

~ Every little single word is true

~ See what love can do

I have chronicled a video highlight of our year here.

(watch here) http://www.youtube.com/watch?v=KTXIHvgMOVg

There were many times our world felt like to was falling apart~ but hopefully we will continue to smile and pull through! We won’t let Parkinson’s compromise our happiness.

Thanks to all who helped make 2013 a memorable year!  Change will happen!

When your world, it starts to fall apart Look deep within, within your lonely heart. Do your best my friend, try and understand Its only you, pull yourself through.

When your world, it starts to fall apart
Look deep within, within your lonely heart.
Do your best my friend, try and understand
Its only you, pull yourself through.

See What Love Can Do ~ Eric Clapton

When your world, it starts to fall apart
Look deep within, within your lonely heart
Do your best my friend, try and understand
It’s only you, pull yourself through

When you tell your story
Make sure your story’s right
Every little single word is true

See what love can do
See what love can do

When the words are in the music, the music is the song
The world would be so happy, if we’d all just get along
I want to see it, a smile on every face

So when we tell our story
Make sure that it’s right
Every single word is true

See what love can do
See what love can do
See what love can do

So when you tell your story, honey
Make sure that it’s right
I finally proved the message true

I see what love can do
See what love can do
See what love can do
See what love can do

When we sing the story
Make sure your song is right
Finally proved the message true

See what love can do
Oh, see what love can do
See what love can do
See what love can do

See what love can do
See what love can do
See what love can do
See what love can do

Read more: Eric Clapton РSee What Love Can Do Lyrics | MetroLyrics